If you are new to PFFD - I recommend starting with the PFFD book

people affected by pffd in nairobi - kenya

Hi, am looking for people with pffd or those affected by it by being parents or friends/family of people with pfffd in nairobi, so that we can network and work together. Kindly get in touch with me, my email is skinuthia2001@yahoo.com

regards

simon

Shane

Hey all its been a while shanes almost 3 and growing like a weed!!!

News Story

I just realized that I had not updated everyone! Our family grew in February by 4! We now have 10 children. For those of you that I have not met, I am an adult with PFFD and congential arm deformities. My husband and I have two children by birth and eight by adoption.

To Syme's or Not to Syme's...

Hello everyone! My name is Megan and I'm a 20 year old university student from Iowa. Currently, I have a big decision to make and was wondering if any of you could give me some input. I have never had to have surgery to correct any aspect of my affected leg. I currently wear what is described by my prostheticist as a "clam shell" prosthesis-fiberglass, with a door fastened by velcro- and it had been working quite well for the first 18 years of my life.

CFD online chat this Thursday 4/22

Just a quick reminder that Dr. Standard (and usually Dr. Herzenberg as well) is having his next online chat this week on Thursday 4/22 at 9:15 PM EDT. This is a great opportunity to get to talk to one, and often two(!), of the most experienced limb lengthening surgeons around. This chat will focus mostly on CFD (pffd) and fibular hemimelia, although there usually a few other diagnoses represented. Besides the doctors, another benefit is that you can chat with other parents as well for their input.

Should we explain to him or not?

My son, Julian is four years old. Here lately we have been having issues with him fighting us when it is time to put his shoes on. We were thinking about explaining to Julian why he needs to have his shoes on but we have different ideas....

My husband feels that we should wait and not have a sit down talk with him trying to explain why or how he is different until the time comes that someone says something to him. He wants to keep that innocence that he has for as long as possible.

New book

I've decided that I would write another book. This one is for all new parents, grandparents, people in society who think that a person with limb differences of any kind will not be able to be a __________ .

We know differently...our children can do anything....beyond what we even believe!

For this book, I am thinking about "older" children...13 into adulthood.

I want to do photos again. And, it's important to me that my books are diverse in ethnicity, gender and ability.

Providing information

I am going to participate in a local rally that provides info on different disabilities and birth defects. My daughter has pffd and I was wondering if anyone could help me with what information I should provide. I appreciate all the help in advance. Thank you!

chiropractic care

To those of you who have kids with PFFD or have PFFD yourself, have you ever looked into chiropractic care as part of the treatment? I've been wondering about the impact to my daughter's spine with walking the way she does (she has a 3 inch leg difference) and if spinal adjustments would slightly decrease the leg length difference. Any thoughts?

Medical Insurance

Some of you might be interested in this information when choosing medical insurance. It is stuff that I have gathered from personal experience.

1. Doctor & Hospital: Decide who you think you want your child’s surgeon/doctor to be. Make sure that the insurance you choose lists that doctor and the hospital he/she works at as "in network".

Pages

Subscribe to PFFD VSG2 RSS